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Monday, December 28, 2009

We are so happy about our choice in Christmas gifts this year for Pat. We purchased the Wii Puzzle Challenge game for our Nintendo Wii and it's perfect for her!

Pat likes that it shows up so big on the television screen. When we played, she guessed a couple of the answers on the normal crossword puzzles. She was also able to find a couple of the words on one of the word search puzzles the game has.

We love that you can select various degrees of difficulty for each type of puzzle. We need to operate the controllers for Pat but it is a great way to stimulate an Alzheimer's patients mind while passing the time. And it is a great way to interact.

Right now Amazon is offering a discount on accessories for Wii's so stock up now!

Sunday, December 27, 2009

Well, it's Sunday and we have been without Pat since Thursday evening. At first, we weren't sure what to do with ourselves. You get used to ALWAYS worrying about that person. "Shhh, be quiet you'll wake her... did you brush your teeth, put your boots on... yes we're going somewhere... put your boots on... of course you are going with us... put your boots on... of course you have your pocketbook." You get the idea and it never ends. If you aren't thinking of answers to her questions, you are thinking of ways to avoid those questions. And in all the silent times you are thinking about how crappy this disease is, how it used to be, what coud be, and what ultimately will be. So when we are away from her it takes time to adjust.

So, being Christmas, we were more emotional than normal. Visiting with a friend, a few drinks, and the atmosphere of the Christmas tree lights, burning candle, and quiet music playing had our guard down when our friend started talking to us about Pat and told us no one would blame us if we couldn't continue to care for her. We talked a lot that night about her, sharing funny stories about our current situation. We laughed so hard that it turned to tears for me.

Oh, this disease stinks. And we can't walk away. As we told stories about her, you could hear the endearment in our voices. We love her. And just because she can be annoying, frustrating, and difficult beyond what any of us could imagine someone to be, we love her.

We have enjoyed the rest for our minds, voices, and patience this weekend. Our weekend away from Pat has given us the break we needed. Having an extra day away made the difference and we actually got beyond the "wind down stage." Tomorrow morning we'll be ready to jump into caregiving again, no matter what we find.

Monday, December 21, 2009

Christmas time can be confusing and exhausting for an Alzheimer's patient. It can also be a positive experience.

Like most things, I can't tell how Pat will react. At least, not until I see her facial expression change, her hands start to shake, and the confusion fully planted behind her eyes, and by then it is too late. I'm sure this is the case for most caregivers.

There is no blueprint for Alzheimer's patients. While there are similiarities, it is not cut and dry. I thought I would point that out before discussing how our Christmas preparations with Pat are going.

This weekend was the launch of our "Christmas season". We began with decorating the tree and sugar cookie making. Pat did okay with both. Last year she could care less about the tree but this year she hung a few different ornaments without direction or hesitation. The sugar cookies were a hit for her too. It took us a while to get her out to the table. Once I realized it was because she thought we wanted her to cook the cookies, I was able to coax her out. She thoroughly enjoyed our mistakes and various candies that didn't fit the color scheme.

Sunday was the party with her family. That morning she signed her cards without much confusion and we were done within 20 minutes! I had expected it to go a lot slower for her, but I think having something to focus her mind on, grounded her. Plus, we left around noon and had the party earlier than normal so she would be at her best point during the day.

Getting out the door was a little stressful. The normal worries about hat, boots, the newest confusion about my coat being hers, and we were off. The ride up was quiet. I tried to keep her focused on where we were going by talking about seeing the kids and grandchildren, but she couldn't retain it.

Once we got there, out of the car with the normal sneakers in the plastic bag, gloves put back on, getting her legs under her, shuffle to the steps, in the door, okay- go all the way through... ahhhh, we had a great time!

It was so nice to see her laughing... and living. Her whole family was there and my heart welled with happiness for her. It is so hard to get everyone together and I know it is what she needs. She needs more than Mark and I, especially during the holidays. She needs those warm hugs from those she loves the most. When I see her hug others, I feel she is trying to hang on with each one.

This morning she remembered yesterdays party still. She slept past 7:30 until 10:30! We started to worry because she NEVER sleeps in. She seems to be happier today. By tonight she may not remember any of it but she had it for a while.

So far Christmas has been fun for her and us. It is going to seem so strange without her here on Christmas morning because she is such a big part of the family. Still, it will be nice to wake up Christmas morning and not have to tell her that it is indeed Christmas day over and over and over again. Pat will be with other family this year for Christmas and I think that's great! They can give her the Christmas cheer and extra love she needs this year.

Tuesday, December 15, 2009

We picked Pat up yesterday morning from her daughter's. It went okay. She was still sleeping and I had to wake her up and that is out of the norm. She was confused when her daughter came in but her daughter just acted like it was normal for her to go to work, kissed her mom goodbye, and breezed out. It works so much better than trying to "make it okay" because we will NEVER be able to make it okay for Pat. I quickly got her dressed, ready, and out the door before she had time to panic. Breakfast was fine, coming home was fine, and I took care of her clothes before she had time to notice them so that went well.

Then we went to my Dad's and she was very confused. She was upset that Mark didn't know where she was and how would she get home and where were her house keys, and on and on. I was able to reason with her that she lives with me, but I realized for the first time, this could be a problem eventually. We know a lot could get worse quick.

Even today, she is more confused. She has asked about her daughter coming here, even though she isn't. She remembers, somewhere in the clouds, something about her daughter, but doesn't remember the entire weekend. I feel bad for Pat to lose so much time. We all talk about how we need more time. Maybe we should feel lucky for all the things that make us busy. She has nothing but time on her hands and each step fades in to nothing behind her, like she was never there.

As the days go by, Pat declines, but only a little here and a little there. I hate this disease. It's impossible to gauge, study, and ainticipate what will happen. At times, we can figure what is triggering a certain reaction, but most of the time we can't so frustration sets in for us... and her.

We get frustrated and have to walk away... but we always want to come back. We know there will be a time, but right now, this is where she needs to be. Maybe just as much for our piece of mind as for hers. We missed Pat while she was gone. Don't get me wrong, we enjoyed our carefree, much needed weekend, but there was a spot where she was supposed to be. And we both felt it.

So I guess when I think about it, it was sweet for her to come home. Yes she was confused and a lot more edgy than most days, but this is where she belongs. This is her home where she has her bedroom, her routine, and her caregivers. And I think deep down she must know that.

Friday, December 11, 2009

Pat is going to her daughters this weekend and I am giddy! It has taken me a while to feel that way. I used to feel like I was weak and ditching my responsiblities everytime I left her. Now, I know I need a break. As the disease worsens and the woman I know disappears, common courtesies go out the window. And it wears a person down. It's hard to keep your calm with a child that never lets up.

I need to remind myself this break is not a typical break from Pat. We get a one hour break per week from Pat. And in that hour we run around like mad people doing all of our errands. Yes, we can take her with us, but sometimes we just don't have the time... or patience, to shuffle through the store, saying hello to people we don't know. Mark and I make our small hour break about her so what kind of break is that really? We are still thinking about her. "What medicines need to be picked up, groceries - make sure we have the Little Debbies, okay let's split up at this store because we only have 20 minutes left, and okay lets go pick her up..." I am usually exhausted after that hour break.

This weekend I am not doing anything for Pat except a little Christmas shopping. I don't need to straighten her room or throw out her "collected treasures" that she has picked up and stored away. This weekend it is all about what I need. Without that selfish focus, I won't have the strength, patience, love and faith it takes to provide the love Pat needs. We all need a little me time.

Wednesday, December 9, 2009

One of the hardest things for families, from what I have heard, is how the Alzheimer's person treats their closest relatives. I don't know how many times I have heard a story about hateful a parent is to their child or spouse. Remember that. I have heard that story SO MANY TIMES. It isn't because it is you. It's how the disease works. It's just another reason I think Alzheimer's is the worst disease out there.

I see Mark's frustration with his mom's anger. And I think he's shocked by it when it happens and a little hurt, especially because my interactions are completely opposite. Pat thanks me, loves me, and trusts me. On occassion, she will get upset with me but it's out of frustration more than anything else.

I don't have the answers to why Alzheimer's patients sometimes act worse around family members than caregivers. But I do have my opinions about it.

I think with Mark a lot of times he forgets that she is sick. He insists on correcting her, reminding her, and teaching her. I just play along with her. Sometimes I correct her but if she starts to get irritated, I just say, "oh, okay Pat." A lot of times what she says doesn't make much sense and I just get tired of repeating myself. I don't think keeping her oriented is as important as keeping her happy.

I don't believe he corrects her so much because he is being mean. He corrects her because it is a natural reaction to correct someone who is doing something wrong or has forgotten something. And he may do it because, well, it's his mom. And he knows what a smart person she has always been. Maybe deep down correcting her is a try at "fixing" her disease.

I think it is easier for an outsider to care for someone with Alzheimer's because they have no expectations. I met Pat in the very early stages of Alzheimer's, before anyone knew she had it. I had nothing to compare her behavior to. I have always known her as a frightened, worried woman and I have always reached out to her in a caregiver sort of role. I can't imagine what it is like to watch a strong woman like Pat slip away. It would be hard not to react.

Her reactions to Mark are compiled with stress, confusion, frustration, and a feeling of loss. She is his mom and now he is telling her what to do. That's hard to take when the roles reverse. She doesn't know she is driving us crazy with repetition, worry, and deceitful behavior. And while she remembers sometimes that she lives with us, I'm sure she isn't thinking it is so we can keep an eye on her. She looks at us like we are stealing her independence. 77 years old and everybody is telling her what to do. You would lash out too.

As I said before, these are my opinions and not medically explored. I live this situation every day.

Thursday, December 3, 2009

There is no "figuring out" Alzheimer's. Once you think you have, things change.

Our water comes from a well so we need to watch the amount of water we use. Plus, as a concern for our planet, we try to conserve water.

Sometimes Pat forgets she went to the bathroom so she will go in 5 or 6 times before bed. We have told her a hundred times not to flush when she just goes pee, but she always does. It's not her fault that she doesn't remember. To help her, Mark made a sign that read: Don't flush when you pee.

As harmless as this sign was, it created a world of problems. She got incredibly confused, and everytime she went in to the bathroom, she would come back out and ask what she was supposed to do. Finally I removed the sign.

I thought removing the sign would make things go back to normal, but she rememberd that sign! This morning she was very upset because she thought we were against her and didn't want her to go to the bathroom. We expected her to just forget about the sign, like she does with everything else, but she didn't. There is just no rhyme or reason with Alzheimer's!

Wednesday, December 2, 2009

It's no surprise that popular Alzheimer's websites like http://www.alz.org/ offer free stress checks for Alzheimer's caregivers. It's the most stressful thing I've ever done. And it's emotionally draining. Don't get me wrong, I want to be here. I made that choice and will take care of Pat for as long as I am able, but it's still stressful at times.

Life is full of stressors without Alzheimer's in the mix and bottom line, Alzheimer's doesn't stop for colds, headaches, bedtime or other stressors. It knows no boundaries.

Something that my mother has told me a thousand times comes to mind right now: You can only control yourself and your reactions. And that is so true. I may be able to curb Pat's reactions but not all the time. It needs to start with me. The calmer I am with Pat, the easier she calms down or accepts what I have told her as truth.

Sometimes my calming voice doesn't reach her, but still if I control my demeanor around her, it helps me too. I used to be a telemarketer and the biggest technique taught to us was the most basic, smile before you call. If you just take the time to smile instead of react, it relieves the tension and opens the door for a positive attitude.

So remember, when it gets tough, smile. Fake it at first if you have to. Remind yourself, you can only control your actions. And you are only responsible for your actions. Do your best and leave the rest!

Wednesday, November 25, 2009

Pat went to her daughters house for the weekend. It was a nice break from the daily grind of Alzheimer's. We enjoyed our time away but as always, we just pay for it when she returns. She is so confused about where she is and where her daughter is.

Yesterday I must have answered 50 times or more that Kelly wasn't coming down. I think she just had the feeling, not the memory, of Kelly so she thought it hadn't happened yet. I feel so bad for her that an entire weekend was gone for her. She really misses her daughter because she doesn't remember that she came to see her. She doesn't get satisfied with a long weekend of visiting like you or I might.

Things only continued to get worse for her. Last night she was so confused and even went to bed without taking her teeth out. We didn't bother to correct her. We just thought she would sleep with them in all night and it was one less thing for her to worry about. We were wrong.

This morning she came out of her room with tears and fear in her eyes. When she said she couldn't find her teeth, Mark and I started helping. We searched everywhere, having her take all the contents out of her pocketbook, opening drawers, pawing through mountains of collected tissues and couldn't find her teeth. Finally, Mark found them wrapped in a tissue on the dresser. Plain sight, but invisible to Pat and me.

Already she has forgotten there was any altercation this morning and the day goes on like normal. For Mark and I though, we shared a raised eyebrow, knowing this is just the beginning.

Wednesday, November 18, 2009

Every week for 50 years or more, Pat has gotten her hair done every week. It works out perfect for us because they let us leave her with them while we run around town as quickly as we can, doing errands. It makes it so much easier not to take her shopping. Now that she has begun shuffling her feet even more, and has excruciating pain in her back, she walks a lot slower. A lot slower.

Before we left for her appointment today she seemed down, irritable, and like Alzheimer's had taken over. I even thought about cancelling her appointment, but she had already been two weeks so we went. And I am so glad we did!

When I walked in to pick her up, she was glowing with a bright smile. It was great to see and made me smile. She grabbed a lollipop, hugged Jamie goodbye and we headed out. Mark even noticed she had an extra skip in her step.

Now we're back home, the sun is setting, and in comes the Alzheimer's stare. Her hair looks good but she probably doesn't even remember having it done.

That's what is so hard about Alzheimer's and the stage we are in now. Pat doesn't know she has Alzheimer's. Telling her something louder or more often doesn't make her remember it, doesn't make it stick. But still we do it. We think of where we are in that moment, not her. We don't stop to think how weird it would be if someone told us huge chunks of time had happened to us and we just don't remember it. I can understand why she is never happy. I understand why this disease is so trying. So, seeing her today, relaxed and sitting with other people, in a normal, non-Alzheimer setting, was great for my soul. These moments, few as they are, are why I do this. I am a caregiver.

For more information on Alzheimer's and other topics, stop by my website.

Saturday, November 14, 2009

Things are finally starting to go back to normal, if there ever was such a thing. Pat has been taking Namenda for a day and a half and she seems to be calmer. Maybe its just my hopeful thinking but I really do think the Exelon patch wasn't the right choice for her and her state of confusion will improve.

Namenda twice a day is what we are sticking with for now. We tred Aricept last year and we noticed a big decline then too. Namenda holds her steady.

For all my thoughts on the Exelon patch, read my complete review. What medicines seem to work for the Alzheimer's person in your life? Share here!

Friday, November 13, 2009

What an interesting day yesterday was. With an Alzheimer's person it is all about patterns and rituals. I think they do this to help remember things. Plus, there are some things we just automatically do like brush your teeth, then wash your face, then comb your hair, and they are ingrained in your mind. Pat has several of those. Which is good that she still remembers these things... most of the time.

Anyway, yesterday I noticed around 3:00 that Pat's eyes were droopy and she was tired. She had been up until 1:00 the previous night and up at 6:00am in the morning so I'm not surprised. I suggested that she lay on the couch for a while because the physical therapist recommended it to stop her back pain. And she did it! Only a couple of questions from her but nothing like the norm. She even let me take her sneakers off and cover her with a blanket. When she fell asleep I was in even more shock. And when the phone rang and she WENT BACK TO SLEEP, I was completely floored and felt I was on a mini vacation. Of course, I couldn't leave my recliner, my little island for fear of waking her, but I felt blessed. Thank you Lord for that breather.

She slept from 3:15 until 4:30 and then continued to lay on her back for another 20 minutes. While she was sleeping you could see her exhaustion. She flinched and clenched her hands, moaned, and actually looked relaxed a little. Mark came home and she continued to sleep for a while. I was able to finally get out of the recliner and visit with him for a few moments before she woke. I didn't want to be out of her eye sight when she finally did. I'm her security blanket. I need to be in eye sight at all times or she gets upset so I went back to the recliner. It's a good thing I did.

You know how you feel after a hard sleep? Disoriented and groggy? Add Alzheimer's, an already neurologically wacked disease, on top of that and look out. She kept telling us she felt funny, which she tells us quite often, but I still haven't figured out exactly what that means. I don't know if it is the confusion, the forgetfulness, the pain, the drugs, or something different like the flu. She seemed a little warm but no fever. It made for a long night and when she said she was tired at 8:00, I let her get ready for bed.

Today, she seems better. I know it is important for an Alzheimer's patient to get sleep. It makes sense. Clarity comes best to me after a good nights sleep. Why would it be any different for her. Who knows, maybe I can get her to take another snooze today. The confusion was so worth the rest she clearly needed. And yes, the relaxation I was forced to enjoy. I have such a hard time staying still.

Thursday, November 12, 2009

BeHome 24/7 offers an outstanding home security system that can provide caregivers a sense of security knowing they can monitor their loved ones at all times no matter where they are! Live video broadcast to your computer, iPod, cell phone and more offers you constant awareness, control and peace of mind.

The ability to control certain elements remotely is a great feature if you are trying to get away and need to manage electricity or heat, this can help with that too. I know how hectic it is trying to get ready with the family. Our family has an Alzheimer's patient and that can create challenges with getting ready. As long as you are near a computer, you can double check your home and make sure everything is okay and still get to your destination on time.

This home security system would be great for anyone caring for an Alzheimer's patient or for senior parents. Affordably priced, easy to setup, and easy to use, this system is perfect for anyone needing to add extra security or wanting to implement surveillance in their home. If you don't have a computer or an email account, you may want to get these first before pursuing this product as these are the requirements for operating it.

Pictured here is the senior system. The wireless panic button that is included is a great option to have! The best part about it is it works with local alert systems so they can be on the way at the same time as you. Quick respond time is important and with the panic button it greatly improves.

I was impressed with how much equipment is included but there should be more cameras to cover more rooms. BeHome 24/7 has a store though for those on a budget or just looking for extra equipment. You can slowly build your system up to what you want it to be.

BeHome 24/7 does have a minimal monthly fee but with it comes excellent support! 24 hours a day, seven days a week you can contact them via computer as well as through the telephone or email.

The set up of the system only takes 20 minutes and the best part is, you get to do it yourself. I like this because I feel uncomfortable having strangers in my home. And I hate having to wait for an appointment to have something installed. That's why this Do-it-Yourself Security system seems to be a perfect fit!

I have seen that the battery doesn’t' last as long as I would like with BeHome 24/7, but it is good for a few days. Keep this in mind if you are planning on going on a trip for a long time. And make sure you have access to a computer if you want to record anything or take still photos.

This home security system offers relief to caregivers for a small cost. Just think, you'll be able to go for that walk, to the store alone, or to visit a friend now. You'll be able to revive senses to give the best possible care when you are there.

Wednesday, November 11, 2009

The silence is deafening at times. When I finish my meal and am waiting for her is the worst. I know stimulating conversation is whats needed. But sometimes I just can't do it. Sometimes I'm just tired, mentally. But, lets face it, there is only so much you can talk about when you are together 24 hours a day, seven days a week. And then add Alzheimer's on top of it. It's hard to have a conversation with an Alzheimer's patient. Especially when they don't remember most or any of it. I need to remind myself that the interaction with her, at this point, isn't so much abou what I will get out of it. It's so rare now that I take anything away now. She's deteriorted so much.

Every conversation has the same pattern depending on who started it. If I start it, the reply is always, "What's that dear?" It sounds sweet doesn't it? It started out that it was, but now it's just one of those things she does a thousand times a day. The inevitable question is followed by me, repeating the statement and her questioning it over and over and over... If she starts it, it just doesn't make sense, or it is full of worry. I try to follow along but it's difficult. And her worries are always the same: "Where's my pocket book, my house key, my car, do I live here?..." and the questions go on and on. I admit it. I'm guilty. I just can't handle it sometimes. And so I crave for that silence I'm hating right now. Does that make me bad? Or just normal? I don't know anyone that wouldn't feel the same way, at some point in the same situation.

But we love her. And sometimes all she needs is a hug or for me to tell her I love her. And sometimes that's all I need too. It helps us both cope to be reminded of what we are to eachother. I am here in this situation because I love her. And if it had been me, she would have done the same thing. It's just what you do when you care about someone.

So each day we fight the silence to stimulate the mind, I bite my tongue and keep my patience with the questions, and we just get through it. Caregivers earn a medal in my eyes. To anyone in the same situation, my heart and support goes out to you. The seclusion can be maddening as it gets harder and harder to go anywhere or have your own life. It all slowly becomes all about Alzheimer's. I hate Alzheimer's.

I am writing a more in depth article: Communication with an Alzheimer's Patient: the Dos and Dont's for Peaceful Living and will publish it on my website, Here 2 Help Services. I'll add the link here when it is done. For now, check out the site for other stories and poems about Alzheimers and a variety of other topics including online business tips, poetry and other information.

Saturday, November 7, 2009

Does it really matter if she reads the same thing over and over again? Pat will flip the paper over and over again, reading the same headlines each time. She'll have the same reaction each time and then repeat, without ever opening it up.I personally feel if it is keeping her mind occupied, which gets harder and harder with each day, then it is good for her.

Maybe the reason any of her behaviors are a problem are because of how it makes us feel. We want her to progress. We want her to be the old Pat who devoured the entire newspaper including the Jumble and the entire crossword puzzle. The old Pat who was a whiz with words and random knowledge. But she is gone most of the time now. And watching her flip that paper AGAIN just reminds us of that AGAIN...

Thursday, November 5, 2009

I love this time of day. Ah, the quiet and undemanding time while Pat sleeps...

I don't care who you are or what you are doing, you need a break. Especially when you care for someone with Alzheimer's disease. I'm no different.

Pat and I spend every day together, every moment... except for the sleeping hours. And its not that she is bad to be around. She isn't. She isn't nasty like I hear about some Alzheimer's patients being. She's the opposite of that. She is a worrier... about everything. But even being the "best Alzheimer's patient there ever was", I need to get away and have Christina time.

So, to get that time, one thing I do is wake up earlier than I have to and drag myself out of bed. It's peaceful and helps me get the right outlook before Pat arises. For other break ideas, check out my articles on my website: http://www.here2helpservices.com/alz.html

From one caregiver to another, I strongly recommend creatng time for yourself.

Wednesday, November 4, 2009

I have wanted to reach out to others to discuss Alzheimer's issues for so long now and I finally did it! I created my website, Here2Helpservices.com with content on a bunch of topics. One of the topics is Alzheimer's. I take care of my boyfriend's mother who has Alzheimer's. She has lived with us since last August (2008).

At first I cut my hours at the bank down to 20 and spent my time running around, worrying about her, and calling a hundred times a day(which got me in trouble at the bank). Finally, I knew I needed to be home with her to care for her and keep her going.

It was the right decision. She's still in there, although she disappears a little more each day. But I think my interactions with her have made a difference and I have enjoyed being home with her. I won't lie, it hasn't all been easy and I know the worst is yet to come, but this is my calling and it just feels good to make a difference in her life. Almost every night, when she goes to bed, she thanks me for being her friend and helping her out. She doesn't realize, but that means the world to me and makes it all worth while.

So this blog is dedicated to her. If it wasn't for Pat, I wouldn't be where I am today - here on my laptop, creating this blog.